The Lived Experiences of the Mother of a Child with Werdnig-Hoffman Syndrome: A Qualitative Case Study

Introduction: Werdnig-Hoffman syndrome is a progressive neurodegenerative disease and an autosomal recessive disorder. This was a qualitative case study focusing on lived experiences of the mother of ۲ children with Werdnig-Hoffman syndrome. Case Report: The case was a ۳۷-year-old widowed, mother of two children with Werdnig-Hoffman syndrome. The first child had died at age ۵ due to breathing and swallowing issues and the second child is now ۲ years old and has tracheostomy. The mother&#۳۹;s experiences of living with children with Werdnig-Hoffman syndrome were “the disintegration of family life, observing the slow death of a children, understanding the children’s feelings, and caring for an ill child”. Conclusion: The results of the present study suggest that the mother had experienced distress due to the disintegration of life, and observing the death of a child, and caring for a sick child. Financial problems, substance abuse, and the death of the spouse were due to the crippling costs and issues of the disease.

Keywords:

Werdnig-Hoffman syndrome , Mother-child relationship , Family , Care giver , Case report , Phenomenology